Thursday, February 28, 2013

Rare Disease Day

Sawyer gets to go home today, praise God!!!  His inflammatory marker labs are now in the normal range, which means it's not a Crohn's flare up (or it was healed—thank you, Jesus!). He's still super lethargic/fatiqued/exhausted, but on the road to healing. Thanks so much for praying!

 

On another note, today is Rare Disease Day.  Click HERE to read about the various special needs in our family.  Some of these special needs are rare diseases, but most occur much more often than many people realize.

 

I decided to just copy and paste (below) the info on our blog regarding special needs, with hopes of encouraging more people to be willing to step out of the comfortable boat and walk on the waves with Jesus.  He is faithful!  Every child was created in the image of God, special needs or not, ALL are precious in His sight!

 

In an effort to protect and respect the privacy of each of our individual children, it is my desire to not publicly share which child(ren) have which diagnoses. However, it is also my desire that our family be an encouragement to all families who are considering adopting a child with special needs, have a child with special needs, or would like to know more about a variety of special needs.


Below is a list of the variety of special needs we've experienced in our family. I am only listing these to be an encouragement, not to boast or intimidate in any way. Believe me, we are just an ordinary family living the life God has called us to, and it is only by God's grace and power that we've been able to live the life He's called us to. God always equips the called, He doesn't necessarily call the equipped. In most of these cases, we didn't have a CLUE about dealing with these special needs, but we trusted God to teach us. He just asked for our obedience, and He's been so faithful to carry us through each special need.


Also, I want to share that some of our children came to us with diagnoses that we feel are inaccurate. Please do not let a label scare you away. Some of our children had very scary labels attached to them, but once we got them home and started research, therapy, specialists, etc., we realized either God had healed that special need or the child never had that special need. There are also those times when one adopts a child with no known special needs or a mild special need, but the child ends up having far greater needs than anticipated. We've lived that story as well, but the encouragement I'd like to share down that path is that the unexpected special needs can be true of birth children as well. The fact is that God is in control; we are not. God knows us better than we know ourselves, and He knows exactly what He's doing when He places a specific special need into a family, whether by birth or adoption. May He be glorified through it all.


I pray this list of special needs will encourage you to take that leap of faith and trust God's will, even when the labels seem far too scary. Our God is more than enough, and many times the labels are inaccurate. Satan would love to use fear to keep us from obeying God's will. Trust and obey God; rebuke Satan.


Please contact me at BossYourHeart [at] gmail [dot] com if you would like to know more about how we've dealt with any of these special needs. In many (but not all) cases, God has done miraculous healing on earth with almost every special need listed, but even if healing on earth is not God's will, remember that ALL are precious in His sight. Trust Him, as He promises to work ALL things for the good of those who love Him and are called according to His purpose (Romans 8:28).


Special needs in our family:

  • Holoprosencephaly (when brain fails to separate correctly into right and left hemisphere)
  • Severe brain malformations
  • Chiari II Malformation
  • Hydrocephalus
  • Agenesis of Corpus Callosum (missing the section of the brain that connects the right and left hemispheres)
  • Multiple brain calcifications
  • Mental Retardation
  • Low IQ
  • Developmental Delays (physical and mental)
  • Learning Delays
  • Severe congenital heart defects (Conner's were healed on earth by God; Chrissie's were healed in heaven by God. We would adopt both kids again in a heartbeat, regardless of outcome. :-)
  • Pulmonary Hypertension
  • Tetralogy of Fallot
  • Pulmonary Atresia (missing pulmonary artery and valves; no blood flow from heart to lungs)
  • ADHD/ADD
  • Dyslexia
  • Depression
  • Sensory Integration Dysfunction/Disorder
  • Bilateral Club Foot (both feet clubbed)
  • Down syndrome
  • Fetal Alcohol Syndrome
  • Older Child Adoption
  • Reactive Attachment Disorder (RAD)
  • Severe Food Allergies (including anaphylaxis)
  • Allergic Colitis
  • Ulcerative Colitis
  • Crohn's Disease
  • Pre-Diabetes
  • Allergy to sunlight
  • Vision Problems: various issues involving a developmental ophthalmologist, astigmatism, near-sightedness, far-sightedness
  • Bipolar Disease
  • Schizophrenia
  • Oppositional Defiant Disorder
  • Encopresis (passing stool to purposefully soil underwear after successfully potty trained)
  • Tourette's Syndrome
  • Tic Disorder
  • Anxiety Disorder
  • Mood Disorder
  • Eczema
  • Parasites (internal and external)
  • Hypothyroidism
  • Hypoglycemia
  • Rickets (Vit. D deficiency which causes bone issues)
  • Sleep Disorders and Insomnia
  • Sleep Apnea
  • Epilepsy/Seizures
  • Open fontanels (soft spots on skull) at a late age (Cooper came home from Ukraine at age 6 years 9 months with both of his fontanels still open)
  • Post Traumatic Stress Disorder (PTSD)
  • Various issues requiring physical therapy, occupational therapy, speech therapy, and feeding therapy
  • Drug and alcohol exposure in utero
  • Hearing loss
  • Suppressed immune system
  • Speech delays, non-verbal children
  • Strabismus

"For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an unexpected end." ~Jeremiah 29:11

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